Jann in TX Posted February 7, 2017 Share Posted February 7, 2017 My dd (15 yo) was recently diagnosed with RND-- Reflex Neurovascular Dystrophy. This was NOT on our radar-- Dr's originally though she had an auto-immune issue (well she still may have that but it is minor right now!). Her pain started in her left wrist around Dec 1. By Dec 8 she lost most of her mobility in left wrist and had increased pain... Dr recommended a Ped Rheum. == appointment made for MAY?!! Mid January DD lost the ability to walk and use her arms (several hours basically paralyzed with pain)-- and then walked 'drunk' for a few days. Our GP actually thought she was faking!!! --but humored us and called Ped Rheum and requested the add be fast-tracked. He got her in the next day! Ped Rheum. immediately knew what was going on even though dd was in stage 1 of RND. Paperwork and other tests have been done and his evaluation was confirmed... DD is set to start a VERY PAINFUL therapy program this week. Anywho-- things have been in a whirlwind for the last few weeks... it is so hard to see dd in so much pain and I'm not able to make it go away. No meds available for her to take either!!! DD has now moved into stage 2-- whole body pain and sensitivity. Hard to see!! We may end up having to homeschool her for the rest of the year-- she really really wants to stay in PS but she is missing too many days (and not enough for homebound instruction). She missed yesterday because she could not walk or hold anything in her hands (plus she was in tremendous pain).... Anyone else have a child with this who can give me advice on how to cope? TIA Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted February 7, 2017 Share Posted February 7, 2017 Do opiods not help at all? What about medicines like lyrica? I hope you get good help and that she gets help from her pain. You may consider taking her to a pain center. They can not only prescribe medications for the pain but also do procedures that could potentially help like pumps that deliver anesthetic. Quote Link to comment Share on other sites More sharing options...
Guest Posted February 7, 2017 Share Posted February 7, 2017 Poor kiddo! I'm glad she got some answer better than 'you must be faking it' but it sounds like she has quite a road ahead of her :( Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted February 7, 2017 Author Share Posted February 7, 2017 Do opiods not help at all? What about medicines like lyrica? I hope you get good help and that she gets help from her pain. You may consider taking her to a pain center. They can not only prescribe medications for the pain but also do procedures that could potentially help like pumps that deliver anesthetic. The standard treatment for children with RND/RSD is to NOT medicate-- as it will inhibit treatment. The 'treatment' is literally saturating the body with pain in hopes that the neuro systems reset. This pain is rated higher than childbirth... just because there is not a specific injury most Dr's just say to push through the pain--the pain reflex is real and the vascular system is clamping down causing muscle pain/weakness/deterioration and can even cause permanent damage (including bone damage!) Yesterday dd missed school because she could not maintain her balance and leg control (thigh muscles were literally frozen due to blood vessel constriction)-- she COULD NOT WALK... her hands were also affected-- she could not hold a small cup of water--she is stoic but had tears in her eyes due to the pain level... The Dr refused to give her a school note...even though he said that this pain is REAL and there is physical damage going on because of it. How the #@#$@ is she supposed to go to school when she cannot move!!! School is willing to accommodate but needs Dr's note per state law. Ugg. I'm stressed. She made it through school today-- but went directly to bed. I'll get her up after a few hours to do her homework and eat. Rinse and Repeat tomorrow. Treatment schedule for tonight was canceled-- they did not get proper order from Dr... so first intense (read this as torture therapy) treatment scheduled for Thursday. Most adults with this condition are labeled as having RSD or fybromyalgia. With children it is more serious as the restricted blood flow does more damage to muscles and bones. Imagine telling a person with severe fybromyalgia to suck it up and go to work.... Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted February 8, 2017 Share Posted February 8, 2017 When you mentioned restricted blood flow, I wondered if you were allowed to do a heating pad to increase blood flow to the area(s)? Hot baths with epsom salts can help my fibro. Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 8, 2017 Share Posted February 8, 2017 Dh has RSD/CRPS. His is type 2 from a traumatic nerve injury. I have never heard of the treatment you are describing, but type 2 is a very different onset than type 1, and much harder to dx early. Look into ketamine infusion. The long treatment (5-10 days) looks promising for type 1. We tried it with dh and it didn't help, but it has helped in ER flare up situations. There's another drug infusion that I can't remember the name of that also looks promising for type 1. I'll try to remember. Are they trying neurontin? What you should know is that no one is an expert with this disorder. It's wicked tricky to treat. Most doctors are throwing crap at the wall and hoping something sticks. Most of the time I tell people to stay off the internet, but this is a disorder that you should be hunting down your own research on. I have to run but I'll check back later. 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 8, 2017 Share Posted February 8, 2017 Also, the no note thing- this guy sounds like a jerk. Anyone who works with pain disorders needs to have some serious compassion. It's great that he dx'd it, impressive really, but both your primary and the rheumatologist are questionable to me. Dump the primary asap. Get a second opinion from a neurologist, pain management, or other rheumatologist on the treatment options/plan. 2 Quote Link to comment Share on other sites More sharing options...
38carrots Posted February 8, 2017 Share Posted February 8, 2017 :grouphug: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted February 8, 2017 Share Posted February 8, 2017 What is the prognosis, Jann? Is there hope of complete remission/cure? I find things are somewhat easier to endure if there is hope that it will improve significantly. Quote Link to comment Share on other sites More sharing options...
Chelle in MO Posted February 8, 2017 Share Posted February 8, 2017 That sounds really discouraging, Jann, but I'm glad they've got a name for it and a treatment to try. :grouphug: Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 8, 2017 Share Posted February 8, 2017 Hugs Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted February 8, 2017 Share Posted February 8, 2017 Yes. DS has diffuse AMPS and a slew of other medical issues, none that are minor. His pain started at age 3, treatment for pain started at 7 after a related illness was discovered and at 10 he was dx with AMPS. He has no memory of not living in pain. He pushed himself hard despite it and a year ago gave up on working so hard. Not even a teenager and already defeated by pain. Are you looking into the intense pain treatment programs like the one at CHOP? My son is on the waiting list for one, we will know for sure at his next appointment. I talked to another mom of a child a few years older with an earily similar story who had great luck, but I am hesitant, the program is suppossed to be physically and emotionally intense. It is hell and people do not get it. It is exhausting to educate those who work with my son only to have them turn around and be angry with him over something he cannot control. I am finding I have less patience with morons and jump into mama bear mode faster these days. The pain is real. Anyone who denies it is not welcome in our life. Anyone who questions it gets schooled, if they deny it is real, they go. I am done dealing with ignorant baffons, they can kiss my fat @$$. Anyone thinking this is harsh does not get how severe this is and needs to take a few minutes and educate themselves. Medical providers are not immune to this treatment. I will find someone else. I have spent more hours in the car driving around my state to find providers than I care to admit. I have fought and will keep fighting for him. I am also sad. I have watched him and his best friend grow up and the differences in development between a child who has always had pain and one who has not is astounding. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted February 8, 2017 Share Posted February 8, 2017 The standard treatment for children with RND/RSD is to NOT medicate-- as it will inhibit treatment. The 'treatment' is literally saturating the body with pain in hopes that the neuro systems reset. This pain is rated higher than childbirth... just because there is not a specific injury most Dr's just say to push through the pain--the pain reflex is real and the vascular system is clamping down causing muscle pain/weakness/deterioration and can even cause permanent damage (including bone damage!) Yesterday dd missed school because she could not maintain her balance and leg control (thigh muscles were literally frozen due to blood vessel constriction)-- she COULD NOT WALK... her hands were also affected-- she could not hold a small cup of water--she is stoic but had tears in her eyes due to the pain level... The Dr refused to give her a school note...even though he said that this pain is REAL and there is physical damage going on because of it. How the #@#$@ is she supposed to go to school when she cannot move!!! School is willing to accommodate but needs Dr's note per state law. Ugg. I'm stressed. She made it through school today-- but went directly to bed. I'll get her up after a few hours to do her homework and eat. Rinse and Repeat tomorrow. Treatment schedule for tonight was canceled-- they did not get proper order from Dr... so first intense (read this as torture therapy) treatment scheduled for Thursday. Most adults with this condition are labeled as having RSD or fybromyalgia. With children it is more serious as the restricted blood flow does more damage to muscles and bones. Imagine telling a person with severe fybromyalgia to suck it up and go to work.... I am sorry. I get it. I think with what you describe if they want her to go to school she will need a wheelchair and accomadations, but the doctor has to agree. I see you are in Texas, I was not aware of a program to treat this in TX, is traveling to another clinic a feasible option? I have had to and it was not easy, I was lucky to be able to do it as a day trip through. As for the program. My son and I are both so desperate as to try it. Not a pain medication but my son does take medication to help with circulation. It is not perfect but it helps prevent further damage and his digit ulcers were able to heal. They cannot give him the medication they would give to a female his age. Ummm, yeah, that your dd is a girl if they ever go this route? I guess. It sucks. All of it. Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted February 8, 2017 Author Share Posted February 8, 2017 Dell Children's Hospital in Austin has an outpatient treatment center like the one at CHOP. DD will begin her intense pain therapy tomorrow at noon. DH is going to take her--the therapist luckily has a south location that she can do the therapy at most days so only an hour drive. With children, the intense pain therapy has an 80% chance of making improvement in mobility-- and just over a 50% chance of actually reversing/resetting the nervous system. The therapist said she will pressure the Dr to write the note for any necessary accommodations-- lets hope he listens! The wait list to get into another specialist is 4-6 months. 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 8, 2017 Share Posted February 8, 2017 Dell Children's Hospital in Austin has an outpatient treatment center like the one at CHOP. DD will begin her intense pain therapy tomorrow at noon. DH is going to take her--the therapist luckily has a south location that she can do the therapy at most days so only an hour drive. With children, the intense pain therapy has an 80% chance of making improvement in mobility-- and just over a 50% chance of actually reversing/resetting the nervous system. The therapist said she will pressure the Dr to write the note for any necessary accommodations-- lets hope he listens! The wait list to get into another specialist is 4-6 months. Ask for a meeting with the school to explain what all is going on and find out how they can help. Can the therapist write a note? The school might not care if it's from her or the dr. Or maybe the jackass primary will do it? You sound like you are already in this mindset, but it's worth saying anyways. Prioritize her treatment over everything else. Don't try to carry on a normal life right now. This is a little like getting a cancer dx. You have to throw everything you have at it as early as possible. Praying that this treatment is a cure for her. Quote Link to comment Share on other sites More sharing options...
raganfamily Posted February 8, 2017 Share Posted February 8, 2017 My sister in law has crps please share what you thought of the treatment at Austin. Sent from my SM-T713 using Tapatalk Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 8, 2017 Share Posted February 8, 2017 Yes. DS has diffuse AMPS and a slew of other medical issues, none that are minor. His pain started at age 3, treatment for pain started at 7 after a related illness was discovered and at 10 he was dx with AMPS. He has no memory of not living in pain. He pushed himself hard despite it and a year ago gave up on working so hard. Not even a teenager and already defeated by pain. Are you looking into the intense pain treatment programs like the one at CHOP? My son is on the waiting list for one, we will know for sure at his next appointment. I talked to another mom of a child a few years older with an earily similar story who had great luck, but I am hesitant, the program is suppossed to be physically and emotionally intense. It is hell and people do not get it. It is exhausting to educate those who work with my son only to have them turn around and be angry with him over something he cannot control. I am finding I have less patience with morons and jump into mama bear mode faster these days. The pain is real. Anyone who denies it is not welcome in our life. Anyone who questions it gets schooled, if they deny it is real, they go. I am done dealing with ignorant baffons, they can kiss my fat @$$. Anyone thinking this is harsh does not get how severe this is and needs to take a few minutes and educate themselves. Medical providers are not immune to this treatment. I will find someone else. I have spent more hours in the car driving around my state to find providers than I care to admit. I have fought and will keep fighting for him. I am also sad. I have watched him and his best friend grow up and the differences in development between a child who has always had pain and one who has not is astounding. You're an awesome mom. Pain disorders are the absolute worst. 1 Quote Link to comment Share on other sites More sharing options...
PinkTulip Posted February 8, 2017 Share Posted February 8, 2017 I don't have any experience with this, but want to send hugs and support for those of you dealing with this. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted February 8, 2017 Share Posted February 8, 2017 Dell Children's Hospital in Austin has an outpatient treatment center like the one at CHOP. DD will begin her intense pain therapy tomorrow at noon. DH is going to take her--the therapist luckily has a south location that she can do the therapy at most days so only an hour drive. With children, the intense pain therapy has an 80% chance of making improvement in mobility-- and just over a 50% chance of actually reversing/resetting the nervous system. The therapist said she will pressure the Dr to write the note for any necessary accommodations-- lets hope he listens! The wait list to get into another specialist is 4-6 months. I had not read the statistics, at least not recently enough to recall them, thanks for posting them. My son has been doing a home program and working with his PT and OT weekly since he was dx, without much improvement. The program he is on on the waiting list is all day everyday for 4-6 weeks. The kids do not attend school while in the all day program here because they want them to focus on treatment. I am happy to read that the school is willing to accommodate her with a note. It is so important to have that support in place. I was a bit taken aback that the doctor did not want to write a note or letter to the school. I was told by our clinic that they will work closely with the school and whatever letters and notes I needed they would write. I hope her therapist is able to make headway and get documentation. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted February 8, 2017 Share Posted February 8, 2017 Anyone else have a child with this who can give me advice on how to cope? Things that help me cope Counselling for me and DH to deal with this on top of all other life stressors. Selfcare. Exercise, meditating, audiobooks, hot baths, my social time, and my candy stash are all important to my well being. Relationship care for DH and I. Nothing fancy. A walk. Waking up a few minutes earlier to cuddle. Eating breakfast together, just us. All of that only takes place daily in a perfect world. Normally I just strive to remember to do one thing before freaking out. I tend to freak out over completely unrelated things and then try to remember my coping skills. Most of all be gentle on yourself!! Do you have a strong support system locally? I would consider seeking it out now. A few things that might help are having meals dropped off, having help with cleaning the house, laundry, or even someone picking up your groceries for you at a drive through (if an option in your location, someplaces will even deliver). Small things that can give you and DH a break to focus on your DD care. 2 Quote Link to comment Share on other sites More sharing options...
*LC Posted February 9, 2017 Share Posted February 9, 2017 With children, the intense pain therapy has an 80% chance of making improvement in mobility-- and just over a 50% chance of actually reversing/resetting the nervous system. The therapist said she will pressure the Dr to write the note for any necessary accommodations-- lets hope he listens! The wait list to get into another specialist is 4-6 months. The program he is on on the waiting list is all day everyday for 4-6 weeks. The kids do not attend school while in the all day program here because they want them to focus on treatment. I am happy to read that the school is willing to accommodate her with a note. It is so important to have that support in place. Well, I know a teen who had this. I guess it was RSD, because it was caused by an injury. (I knew it by name, which I can't remember since it has been a few years. I searched RND, and it describes what she had, except the cause was known.) I'm sorry your daughter is going through this. It was bad for the teen I know. She went to an out-of-state program like a PP described, where treatment was all day every day for more than a month. Before starting the program, she tried to go to school in a wheelchair, but she couldn't stay all day. When she came home from the program, she was better and did not need the wheelchair. She tried school again, but still couldn't make it all day. She basically lost a year of school. The pain was still there after the program. The focus became to continue therapy locally to continue what they did at the program and to teach her to live with the pain/work through the pain. (At this point, the pain no longer caused her to lose use of her leg & arm.) One strategy was to stop talking about and/or asking about the pain since those things triggered the teen's body to think about the pain. Around this time, the family moved away, so I do not hear frequent updates anymore. However, I saw the mom not too long ago...the teen is in high school, driving, working, etc. I do not know if the pain is still there; how bad it is, etc, but it was not mentioned when I asked how is Teen. I did find out she is now living a normal life. Praying that your daughter will be able to say the same sooner rather than later. Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted February 9, 2017 Author Share Posted February 9, 2017 We are not sure of the cause (does it even matter?)-- she had a hard workout at the rock gym one week before it started (Dec 1)-- we finally got an MRI last week-- but any damage would have had time to heal and her hand/wrist has been in a soft cast since then. DD was a bit anxious this morning-- but ready to get the therapy started. DH is taking her... Our GP finally agreed to write a Drs note for PT that has to be done on school days-- he will consider the PT's recommendation if she determines that dd needs school accommodation (for things like days she cannot walk/move--on those days her pain is so great that a wheelchair would be of little use in school-- she would not be able to pay attention/participate). Quote Link to comment Share on other sites More sharing options...
sassenach Posted February 9, 2017 Share Posted February 9, 2017 Glad the dr came around. Knowing the cause doesn't matter in the sense that if you don't know it, there's no use in trying to figure it out. I only brought it up because when you are clearly dealing with type 2- a known injury (in our case, a nerve that was severed by a steak knife), it's a different beast as far as treatment options/outcomes. With type 2, there's an interplay of ongoing injury and nervous system response. With type 1 it's just the nervous system. Plus, it seems to be different with kids than adults. Thinking of you today. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted February 10, 2017 Share Posted February 10, 2017 Our GP finally agreed to write a Drs note for PT that has to be done on school days-- he will consider the PT's recommendation if she determines that dd needs school accommodation (for things like days she cannot walk/move--on those days her pain is so great that a wheelchair would be of little use in school-- she would not be able to pay attention/participate). My understanding of the reasons for making them go during a flare up is to go through the motions in order to become functional again. That she is not benefiting from the instructional time now is not the end goal, the end goal is to get her to where she can attend school, even with pain, and benefit from the instruction. Quote Link to comment Share on other sites More sharing options...
Χά�ων Posted February 10, 2017 Share Posted February 10, 2017 Today was a bad day here. Going through the motions is hard enough. Knowing that everything will have to be repeated again is just salt in the wound. Quote Link to comment Share on other sites More sharing options...
*LC Posted February 12, 2017 Share Posted February 12, 2017 We are not sure of the cause (does it even matter?)-- she had a hard workout at the rock gym one week before it started (Dec 1)-- we finally got an MRI last week-- but any damage would have had time to heal and her hand/wrist has been in a soft cast since then. DD was a bit anxious this morning-- but ready to get the therapy started. DH is taking her... Our GP finally agreed to write a Drs note for PT that has to be done on school days-- he will consider the PT's recommendation if she determines that dd needs school accommodation (for things like days she cannot walk/move--on those days her pain is so great that a wheelchair would be of little use in school-- she would not be able to pay attention/participate). I hope that your daughter was able to start the therapy without any more delays. From the teen I know, I know it was extremely hard/painful, so I can't say I hope it went well. Praying that she responds to the treatment and that she is one that regains mobility and loses the pain. I am sorry I confused you in my original post. The teen I know developed RSD as a result of an accident/injury. In reading to make sure I was remembering the name correctly, I saw that RSD comes after an inury while RND does not. She also needed a wheelchair to attend school at all, because she was unable to walk. In her case, it took a while to diagnose, because things were attributed to the unusual injury for a while. Quote Link to comment Share on other sites More sharing options...
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